posted
(This came up on another long thread. Creating it's own here)
Hi all,
This is a *really* important thread. You might not realize it now, but it has something *really* important in it.
Let me see if I can connect the dots for you. Then, maybe together, we can DO something and CHANGE something. For us all.
Borreliosis is a disease classified as a spirochetal illness. There are other spirochetal illnesses with well defined stages. Specifically, syphilis, the scourge of at least a few centuries. In medicine, syphilis is characterized in stages, JUST LIKE BORRELIOSOS SHOULD BE.
We don't need to re-invent the wheel, AT ALL. In fact, most M.D.'s that I have been able to "win over", will readily use the syphilis terminology to describe Lyme Disease, and GET IT.
We all have "tertiary borreliosis", or, "tertiary lyme disease".
The organization that provides those medical codes to EVERY doctor and medical organization in the U.S. is the International Statistical Classification of Diseases and Related Health Problems. The codes are frequently referred to as ICD-9 codes. You can find them here:
Didn't see it? Didn't find it? Click on the "Other arthropod-borne diseases" and look for the SINGLE code of 088.81.
While this may APPEAR to be a minor problem, it is HUGE. Every doctor and medical professional in the country turn to this coding book for the establishment of a diagnosis. It is like hearing a word and looking it up in the dictionary to see if it is there. When they turn to this book, they find this aberration, and it STRONGLY REINFORCES the deception that borreliosis is not a significant HIV class systemic illness. Major health organizations come to the same conclusion, especially the ones who PAY for treatment.
NOW, is the time for change.
NOW, is the time to push for change.
Both ILADS and the LDA should unite to lobby this organization for the "Changing of the Codes". Lyme Disease, or borreliosis, NEEDS its own set of comprehensive codes, nearly identical to that of syphilis. A set of codes that includes the discrete stages of infection and wide variation of infection type (i.e. CNS vs. arthritic).
The good news is that we DO NOT have to cross the BUM STEERE's of the CDC or the IDSA to lobby the coding organization. Any M.D. or group of M.D.'s can lobby for new codes. A description of the process can be found here:
(While the CDC is the host for the coding organization, they DO NOT CONTROL IT). We can lobby for change.
Imagine this vision. In each Doctor's office across the country, a complete set of codes for a multifaceted, multistage, complex spirochetal illness. One that contains the terms:
latent persistent tertiary neurological
Each HMO would have MULTIPLE BILLING CODES to process for this disease. Resulting in, hopefully, greater care and payment for Lyme Disease.
PLEASE DO NOT contact the coding organization privately. THIS WILL NOT HELP, BUT RATHER HURT our cause. Please DO contact ILADS and the LDA personally to push forward on this.
This could be our greatest success in the diagnosis and treatment of Lyme Disease outside of a scientific breakthrough.
Keep on, keepin' on!
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
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posted
Lyme Wolf, I'm the one that started all this bruhaha. I agree that the coding system should be changed but there appears to already be codes for some of the things we Lymies have.
The code for Babesiosis appears to be 088.82 The code for Borrelia and Unknown appears to be 136.8
What I find very interesting and part of why I started the other thread is the doc did not check those as my diagnosis even though he said that it is what I have and what he's treating me for.
Was it strictly insurance reasons? Not sure since I don't have insurance so right now that would be a moot point.
Or was it because of the other thing he told me which is what that thread is about? Babesiosis and Borrelia can't be chronic? I think it's the "chronic" part that is throwing the monkey wrench into the works.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I think this is definitely worth talking about. Before jumping in, we'd have to find out the consequences of being labeled with a particular code. Do the treatments vary? Does insurance cover one but not another? What would be the practical effects and would they be good or bad for us?
Here are the categories from the website wolf provided: 2007 ICD-9-CM Volume 1 Diagnosis Codes > Infectious And Parasitic Diseases 001-139 > Syphilis And Other Venereal Diseases 090-099 >
# 090 Congenital syphilis # 091 Early syphilis symptomatic # 092 Early syphilis latent # 093 Cardiovascular syphilis # 094 Neurosyphilis # 095 Other forms of late syphilis with symptoms # 096 Late syphilis latent # 097 Other and unspecified syphilis # 098 Gonococcal infections # 099 Other venereal diseases
Cave the dr tells which stage we have the same way the syphilis dr tells which stage it is. We'd need another category for musculoskeletal and maybe cutaneous, as well as the "other forms." Early and late Lyme latent is positive titer no symptoms. Instead of gonococcus and other we could list the various VBDs.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks for bringing this up, Lyme Wolf.
What strikes me though is....
Will it make any difference at all if the codes are changed?
Insurance companies don't want to cover any "stage" of Lyme except maybe the "initial tick-bite/rash" stage. Will new code numbers change any of that?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
I think this is a great idea, and I think we need to start using appropriate language in the lyme community, as well (ie. secondary, tertiary, neuro). I suggested this a while back, and got completely flamed. Glad to see it come back up.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hmm, syphylis and other venereal diseases?
They may have to admit it could be sexually transmitted then. Their category here is "sexual transmission", not spirochete? They would need to re-do their categories.
There appear to be 2 ways mentioned for categorizing the lyme:
manifestation (neuro, etc.) time frame
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I suspect chronic lyme will come under a code for "autoimmune" someday.
They will not be focused on destroying the triggering pathogen, only what symptoms it CAUSES.
Treat the symptoms, not the underlying pathogen.
We don't know HOW to hit the pathogen (or won't admit it!)...be it HIV or Bb...so let's merely treat the symptoms as they arise.
IMO...wrong tactic. We have to focus on the ROOT of the problem. Eliminate it and the body will repair itself.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Marnie, I think that is what everyone is afraid of.
Problem is, is that the entire human population eventually will be disabled, as it will spread. That is my forecast.
The disabled will be a massive cost to the government for services, other medical care (organ breakdown) and housing.
I disagree with the auto-immune concept. It implies self-mutilation. (another attempt to psychologize illness).
To me, it is one tricky camoflouge but the immune system can recognize it, and does attack. The labs just dont see the enemy within. So it just looks like the body is attacking itself.
Inflammation is a high alert status....Code Red.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Please note that syphilis in late stage is also most of the time negative by Elisa and other tests.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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